Behind HeLa

There was a book exchange and I pounced on Rebecca Skloot's 'The Immortal Life of Henrietta Lacks'. Non-fiction. Henrietta Lacks is real. Lived and died 1920 - 1951, just 31 years old. Watched a documentary on the woman and HeLa, and also caught something fictional on Law & Order S20E21 titled 'Immortal' that ran its storyline pretty close to what we know now. (Reviews here, here, here and here.)

Samples of Henrietta Lacks' highly aggressive cervical cancer cells were supposedly taken without her permission and eventually cultured to create the first known immortal cell line for medical research - the HeLa cell line. And those cells were successfully kept alive, multiplied and cloned, and sent around the world to do all sorts of product testing in every industry. You can google everything else.

Anyway the book talks about more than the lady's contribution to virology, bio-tech and research. It frames her as a woman, a wife, a mother, a human being in the community. There were photos of the house, of the doctors and nurses then, and especially of her descendants, and her family now, the grandchildren and all. It also painfully talks about racial tensions back then, and of the family's feelings now, about the medical community using the cells that still live, and John Hopkins Hospital's initial actions. Ethics. The author's 10-year research to pen this book is absolutely impressive in fleshing out the lady behind HeLa.

It touches on health policies in the country too. The real criticism is on the non-existent rights of patients whose tissues and cells have been removed to aid new research for treatments and drugs. It's an ongoing battle of which patients' privacy is losing out to science's ideal of the greater good. Back in the 50s, there wasn't any firm stance on patients' rights, patents or copyrights. Nobody would dream of publishing a person's name with their genetic information without explicit permission all bound up in legality. But Henrietta Lacks' genetic code is all over the world. The author brought in John Moore, who had hairy-cell leukaemia concentrated in his spleen and sought treatment between 1976 and 1983, wised up and refused to sign his doctor's consent forms that asked him for permission to develop cell lines from samples taken from his blood or spleen. John Moore eventually sued, over the Mo cell line, and lost.

Before the book begins, after the Prologue, it holds a page of thoughts by Henrietta's daughter, Deborah, who passed away in 2009. It's simply titled 'Deborah's Voice'. So poignant.

When I go to the doctor for my checkups I always say my mother was HeLa. They get all excited, tell me stuff like how her cells helped make my blood pressure medicines and anti depression pills and how all this important stuff in science happen cause of her. But they don't never explain more than just saying, Yeah, your mother was on the moon, she been in nuclear bomb and made that polio vaccine. I really don't know how she did all that, but I guess I'm glad she did, cause that mean she helping lots of people. I think she would like that. 

But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can't afford to see no doctors? Don't make no sense. People got rich off my mother without us even known about them takin her cells, now we don't get a dime. I used to get so mad about that to where it made me sick and I had to take pills. But I don't got it in me no more to fight. I just want to know who my mother was.